title: Health related quality of life in parents of six to eight year old children with Down syndrome.
abstract: Raising a child with Down syndrome (DS) has been found to be associated with lowered health related quality of life (HRQoL) in the domains cognitive functioning, social functioning, daily activities and vitality. We aimed to explore which socio-demographics, child functioning and psychosocial variables were related to these HRQoL domains in parents of children with DS. Parents of 98 children with DS completed the TNO-AZL adult quality of life questionnaire (TAAQOL) and a questionnaire assessing socio-demographic, child functioning and psychosocial predictors. Using multiple linear regression analyses for each category of predictors, we selected relevant predictors for the final models. The final multiple linear regression models revealed that cognitive functioning was best predicted by the sleep of the child (β=.29, p<.01) and by the parent having given up a hobby (β=-.29, p<.01), social functioning by the quality of the partner relation (β=.34, p<.001), daily activities by the parent having to care for an ill friend or family member (β=-.31, p<.01), and vitality by the parent having enough personal time (β=.32, p<.01). Overall, psychosocial variables rather than socio-demographics or child functioning showed most consistent and powerful relations to the HRQoL domains of cognitive functioning, social functioning, daily activities and vitality. These psychosocial variables mainly related to social support and time pressure. Systematic screening of parents to detect problems timely, and interventions targeting the supportive network and the demands in time are recommended.
authors.affiliation: Academic Medical Center/Emma Children's Hospital, Psychosocial Department, Amsterdam, The Netherlands.
authors.forename: Jan Pieter
authors.initials: JP
authors.lastname: Marchal
authors.forename: Heleen
authors.initials: H
authors.lastname: Maurice-Stam
authors.forename: Janneke
authors.initials: J
authors.lastname: Hatzmann
authors.forename: A S Paul
authors.initials: AS
authors.lastname: van Trotsenburg
authors.forename: Martha A
authors.initials: MA
authors.lastname: Grootenhuis
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003430:Cross-Sectional Studies; D004314:Down Syndrome / Q000451:nursing* / Q000503:physiopathology; D005260:Female; D006304:Health Status; D006801:Humans; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Cross-sectional study; Down syndrome; Health related quality of life; Leisure; Parents; Predictors; Social support